A day in the life…….

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The title of this post describes the battle that I am knee deep in with E. How long can a mother expect to have to wait for her child to follow a directive? One minute, one hour, one day? It was on day 3 that I took the clothes from the floor of the first floor bathroom and back entry. It could be argued that I fired the first shot.

The years spent together have not served to minimize the conflicts. We were told from day one, that an adopted child cannot be expected to conform to a ready made family. We the parents must conform to the child. As a result, we took advantage of “kid time” a group for adopted kids and their sibs, multiple therapists, and untold hours of education regarding the effects of trauma, and exposure to alcohol on the developing child. My language and style of interacting were molded by all that I had been taught. Build the relationship and the rest will follow. Still rather than falling into the rhythm of family life, this child continues to fight it tooth and nail.

On Sunday I let him know that cleaning the bathroom was the ransom I was due in exchange for his belongings. As of this morning, they remain in my possession. This is a child that was born to cut off his nose to spite his face. Two mornings in a row he spews expletives my way, angry that he is without his sweatshirts, black skinnies and belt. Something deep within is preventing him from paying the ransom. Long ago a therapist told me that these kids hold on tight so as not to lose themselves along the way. My dilemma? How to break through the stubborn without inflicting more pain?

This is a picture of E after having just been presented with his new bike. E has been obsessed with BMX biking for over one year. He began looking for a BMX bike last winter on the internet. E has champagne taste on his parent’s beer budget and thus was looking at bikes that cost in excess of $250. In the spring Tom bought him a bike on Craig’s list. E promptly destroyed the bike in an effort to make it into something that it was not.

E loves to rebuild things so I enrolled him in a bike making class this summer. He spent 15 hours at The Bike Depot in St. Paul learning how to build and repair bikes. Before the class even began, E decided that he would not like the class because the bikes wouldn’t be the “right kind.”Needless to say, E left the bike making class without a bike. He deliberately chose to help another kid with his bike rather than make a “lame one.”

E was not moved by my argument that a “lame” bike could get him from point A to point B just as easily as a “cool” bike. Fast forward to Christmas. Tom had done his research by looking at the bikes that E had bookmarked on the computer and talking to E’s BMX pals. Tom bought a $300 like new bike on Craig’s list for $100. It is in fact the same bike that E wanted to buy from his friend a few months back. So how do you think E reacted? Drum roll please…. It’s no good. E sent his dad a Facebook message earlier today stating that since he cannot do a 180 on the bike, it is the wrong kind. He has resumed looking for an alternative bike.

E is unwilling to entertain the idea that there isn’t a bike out there that is going to give him the BMX talent that he pitifully lacks. His fantasy, which he had spent months nurturing, of becoming a professional BMX bike rider complete with sponsors was shattered by the red bike standing in our living room.

Reality and its limitations is hitting E hard. It is difficult for me to be supportive when he takes what we give him and throws it back in our faces. I know intellectually that E is trying to fill a hole that can never be filled. The hole was caused by a mother who drank while she was pregnant and the complex trauma that he endured during the first 6 years of his young life. That having been said it still sucks and wears me down knowing that nothing that we do on his behalf will ever be perceived by E as good enough.

My son likes to poke holes in his face. Beginning about age 9, he began to ask if he could get his ears pierced. I figured that if he was a girl we would have said “yes” so to me it was no big deal. Tom adamantly disagreed. By age 12, Tom had come around and we surprised him with a trip to Walmart on his 12th birthday. He left the store with the bling that he had long craved.

Well, the piercings became a major pain in my ass and pain in my son’s ears. My son found it difficult to leave the earrings alone. He repeatedly lost the earrin backs and subsequently the earrings themselves. There were many arguments over my refusal to continue to replace earrings that my son had used irresponsibly. As of today he only wears an earring in one ear.

His latest obsession is with lip piercings. Our response to his latest request has been a strong “NO.” Unfortunately, his parent’s lack of support has not stopped his attempts to add ornamentation to his mouth by his own hands. Several months ago, my son told me that he has indeed succeeded in piercing his lip. He stated that he used one of my sewing needles and had sterilized the needle with alcohol prior to using it. I warned him of the risk of infection and told him essentially to “knock that shit off.” If only my warnings were heeded.

The other night as I entered my bathroom to ready myself for bed I noticed several pieces of bloody Kleenex and cotton balls in the bathroom trash. I entered my son’s room and demanded to know what he had pierced. After initial denials, he admitted to piercing his lip again. I again warned him of the risk of infection that he faces every time he places a foreign object through his skin.

The irony is that this child is a germaphobe to the extreme. He soaks his toothbrush in boiling water if it falls in the sink. He will not use a drinking glass if there is a tiny chance that someone else used it first. Most nights he replaces the silverware at his place because it does not meet his specifications for cleanliness. In an attempt to prevent further piercings, I locked the alcohol and sewing needles in my room. Oh, how naive I am to think that my proactive move would succeed in deterring him!

As of last night he is sporting a new piece of metal in his lower lip. I am at a point where I simply don’t really give a shit. This child has not up until now taken to heart any of my warnings. I am resigned to the fact that at some point in the near future he and I will be trotting down to our doctor’s office for Penicillin. I will, however, be sure to request that it be given via an injection in his ass, so he’ll be sure to feel the consequence.

My son struggles with anxiety. I am not sure if it is attributable to his FAS or the complex trauma that he endured prior to joining our family. Regardless of the cause, it impacts his daily life and that of those around him. There is rarely a week that goes by that he doesn’t ask me to take him to the doctor for yet another ailment that he is convinced will eventually kill him. He is obsessed with his skin, convinced that the variations in pigment are a disorder of some sort. A recently noticed acne pimple on his face was “cancer, just like uncle Don had.”

He is obsessed with the cleanliness of the dishes and utensils that he eats off of. Many nights he will get up from the table to get a different fork or knife. His brother, who sets the table is frequently accused of sabotaging the cleanliness of his glass, fork etc. His rants regarding dirty utensils are usually enough to disrupt the dining experience for all of us. This morning, he dumped an entire bowl of cereal down the drain because he believed the bowl, taken straight from the dishwasher was dirty.

The irony of this situation is that he lives in a pigsty. There is more bacteria multiplying in his room than in most research labs. He is forever putting inedible objects in his mouth to satisfy his need to chew. He chews on dental floss, his sleeves and legos. He also rarely washes his hands prior to eating unless told to do so. My frequent reminders were always met with anger so I quit. Let him eat with garbage dripping from his fingers. It is no skin off of my back if he gets sick.

Most of our days are spent in the midst of trauma and drama. As a result, it isn’t often that I spend time reflecting on the circumstances in my son’s past that formed his personality and nervous system. I would like to think that if he had joined our family at an earlier age, he would have been spared some of his discomfort, however, from the stories I hear from other adoptive parents, it is unlikely to have made a difference.

The damage to this child began before his birth by a mother who could not control her need for cocaine and alcohol. Birth mom, was given too many opportunities to get her shit together, at my son’s expense. The first year of his life, critical to the development of trust was disrupted with multiple placements within the system. As a result, there is damage to his brain that cannot be undone. Seven and a half years within a loving ( he may disagree with my choice of words) structured and predictable environment have done little to reverse the damage.

Last evening, Patrick came outside after dinner to join his brother and I in the task of shoveling. He stated “I hate it when they yell at each other.” Through the process of adoption, E was spared from continued trauma at the hands of the system, the result of which has introduced trauma into our family. This is the often unspoken irony of special needs adoption.

But as Tom says “It is what we signed up for.” We have learned not to start the day without putting on our armor. Some days being calmer than others, and the armor is taken off, and for that we are thankful.

I received a call today from the Vice Principal. E had been once again sent out of class and now would be ineligible to play basketball for the school. I sent the email below to his special ed case manager.

“Thanks Tom. I did hear from the vice principal earlier this afternoon. At this time I would like to formally request a meeting to be attended by the IEP team and the vice principal. The “one size fits all” method of discipline is inconsistent with the recommended approaches for dealing with kids with FAS.

My understanding from the IEP meeting held in the fall, was that there was a plan in place to have E return to your room when he has been unsuccessful in the regular ed classroom versus shipping him directly to the focus room. I am unsure if this is still happening. The letter sent home today stated that he said the word “masturbation” out loud while the teacher was talking. I have to believe that there was a better way to handle this type of situation.

Please advise on a day and time that we can meet.

Thank you,”

If you read the email closely then you know that the offense today was saying the word “masturbation” out loud. Can we get any more ridiculous? Tom will be attending this meeting along with me. It should be entertaining to say the least. I’ll keep you posted.

Physical disabilities are most often obvious to the observer. We can see a wheelchair, a leg brace or a cane. Disabilities of the brain can be less easy to identify. In cases such as Down Syndrome there are distinct physical characteristics. Disorders such as Autism and Asberger’s are more difficult to see with the naked eye, yet they can be just as disabling to the person affected. Fetal Alcohol Syndrome (FAS) in very severe cases can cause facial abnormalities, visible to trained physicians, but unlikely to be distinguishable to casual observers. In my son’s case, these facial features are absent. The depth of the damage to his brain is invisible, and that is the problem.

From the outside, my son appears to be a normal well developed 14 year old. Inside his brain, however, the areas that affect memory, judgment, planning, impulses and emotion are damaged. The odd thing about FAS is that the ways that the above skills are affected can vary from day to day. A child with FAS may be able to complete a math problem on Monday yet unable to complete the same math problem on Tuesday. Short-term retention of information can also vary from day to day. Pathways in the brain are seemingly unobstructed one day and full of road blocks the next.

Because of the fluctuations in the abilities of a child with FAS, it is easy for teachers and parents to believe that the child is being manipulative when they claim to not know something that they knew the day before. Living with the uncertainty and fluctuations of this disability is a recipe for insanity. I know this first hand. My sons lives in the “behavior/focus” room at his school. His inability to self-censor gets him into a lot of trouble. He is impulsive and enjoys seeking attention from other students. As a result his behavior in the classroom can be disruptive. Teachers unschooled in the ways that FAS can manifest itself are happy to send him away from the classroom.

I received a phone message from the focus room teacher on Tuesday. My son had been sent there for calling another student a “lobster.” My first thought was “You have got to be kidding me?” The teachers message stated that a physically disabled girl with communication problems was the target of my son’s name calling. I do not in any way condone my son’s behavior, however, I take offense at the fact that there seems to be no willingness on the part of the administration to see my son as differently, but equally disabled a the girl that he targeted.

Thankfully, my son’s special ed teacher took my call in the middle of his class and spent time listening to my concerns. He said in so many words that he is equally frustrated with the one size fits all method of discipline at the school which does not take disabilities into consideration. He agreed to speak with the Vice-Principal to advocate for my son. Due to his frequent trips to the focus room, my son was in danger of being kicked off the basketball team.

Yes, my son’s behavior is at times verbally abusive and very obnoxious. He continues to be singled out for his negative behavior and rarely praised for the things that he does well. Taking a sport away from a child that suffers from impulsivity, hyperactivity and low self-esteem is not going to change his behavior.

I am happy to say that the advocating done by the teacher on behalf of my son was effective. He remains on the team and was able to play in the game yesterday afternoon. This is not the first battle that I have fought for my son and it will not be the last. For those of you that would like to learn more about FAS, there is a link to the Minnesota Organization on Fetal Alcohol Syndrome on the right hand side of my blog.

Cut and paste the address below into your browser to see the images of a brain affected by FAS and a normal brain.